Your weekly re-cap of what is going on within the MRKH community #MRKHmonday

The Beautiful You MRKH Foundation planned Meetings around the US for the next year:

October 25–Boston Children’s Meeting (age restrictions)http://youngwomenshealth.org/mrkh-conference/

October 26–Boston Get Together (All ages) at Simmons College, co-hosted with The MRKH Organization, Inc.

May 2015 (date not set)–MRKH Day in Ann Arbor, MI

June 6, 2015–MRKH Meeting at Texas Children’s Hospital, Houston, TX

August 1, 2015–MRKH Meeting in Seattle, WA

October 2015–Boston Children’s Meeting

2016 Meetings: Ann Arbor, Atlanta, West Coast (LA or SF area) Houston, Boston

The West Coast Meeting will alternate between the Pac Northwest, Northern CA area and So California

This week in blogs:

This blog talks about the adoption journey. Please read one of our MRKH sisters first blog post here: http://whimsicalbee.com/hope-box/

Kristen Peterson talks about self acceptance and finding herself in her blog post titled, “The caterpillar and the butterfly.” Please read the post here: http://www.mrkhuh.blogspot.com/2014/08/the-caterpillar-and-butterfly.html

This week on Facebook:

Do you speak Spanish? If so, I encourage you to join MRKH Soporte Conciencia Experiencia. This group has women from Chile, Mexico, Colombia, Peru, Costa Rica, Spain, Panama, etc., Please click on the link below to join the group:

https://www.facebook.com/groups/334976756660553/

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Happy MRKH Monday everyone! Here is your weekly update. #MRKHmonday

1) The Stella and Dot Trunk Show was so much fun! As of this evening, we have raised $284 for the Beautiful You MRKH Foundation. The online Trunk Show will remain active until September 5th, so if you missed the event in person, you can still order through the website (click below). http://www.stelladot.com/ts/i9tx5

It was great to finally meet Deb Donovan in person. She showed us how to braid a scarf and how to turn one into a vest. She also demonstrated how most of the jewelry can be worn in multiple ways. It was great meeting her family and seeing the love they have for her.

The highlight of the afternoon came from the most unexpected place. One of the attendees, who was there to support her friend with MRKH, gave me two $1 bills as a donation. Here is her story: As she was getting ready to leave for the party, she told her sons where she was going. They said, “Wait!” and ran into their rooms. They each came back with $1 from their piggy banks. The kindness and caring behind those two dollar bills will stay with me as a reminder of how many lives each of us touch, and how the smallest gifts given with love mean so much to those who receive them. XOXO Amy

2) We want to highlight some great recent blog posts by some of our MRKH sisters.

Chrissy writes a great post stating how MRKH hasn’t stopped her and others women from becoming mothers. Chrissy also invites you to join her private group, Mothers with MRKH. Please read the post here: http://chrissyandlee.weebly.com/follow-our-journey/mothers-with-mrkh

One of our MRKH sisters recently ‘came out’ with having MRKH in her blog. Please read Janay Cooks’ powerful post, “Finding Purpose in your pain” by clicking on this link: http://naturaljournalist.wix.com/natural#!Finding-purpose-in-your-pain/cmbz/6896A6DF-4405-4D47-BACE-F977AFAF80B7

3) Do you have MRKH and you don’t feel comfortable being in an open group? There is this great private group for younger women with MRKH called the Fighters! The group was started by a young woman who wanted to keep contact with her sisters that she met at the Boston Children’s conference. If you are interested in joining, please private message me (Christina MRKH) and I will you introduce you to the administrator of this page through private message.

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Here We Go Again

Here we go again.

It fails to amaze me how life continues to evolve well beyond what I thought was a fair rate of change; altering so many of my ‘constants’ from what I can now refer to, as my previous life. Most corners of my life remain familiar; same job, same bedroom, same wardrobe of clothes and I rarely sway from the same dinner after yoga. But, the massive and most missing part of this puzzle which is no longer there to be starred at is – my significant other. My emergency contact, my first instant message of the day, my dinner for two, my technology ‘go-to’, my friend and my final good-night, he has gone.

As you may have read in a previous post, I have had three ‘proper’ boyfriends in my life, all of whom received my MKRH news in a less than conventional way. The above mentioned, received a text. Upon receiving this text some ten years ago, the reply I swiftly received was “its okay”. That was the perfect validation, allowing me to continue on my pursuit for serious boyfriend number three, however I fear now, none of it was actually okay. It goes without saying, that MRKH sadly will dictate the rest of our lives in many ways- whether the new path is a positive one as opposed to a destructive one, is completely and entirely up to us. You may read this with resentment and impossibilities; with that sickly, twisted stomach angst, however, what I have learnt in the last 28 days is, “MRKH, I need your help”. The same MRKH that I referred to as ruining my 20’s, the same MRKH that manifested itself as the demon diagnosis and the four letters that would become part of my daily vocabulary. But now,” MRKH, I need your help”.

Losing friendship and love is an impossible pain to comprehend. I see no broken bones or blood seepages yet, I actually hurt. I feel scared and exposed and I don’t know how I will find the love that everyone promises me I am worth. Saddled with a new beginning and a new declaration of who I am and what my body can perform, seems yet another challenge sent to me by the universe. This pain is serrated to touch, chalky in texture and metallic in taste-it’s uncomfortable and impossible to digest. I am to once again grieve the lost family (as it currently stands) and stay poised to script my truths and diagnosis all over again after a well deserved ten year reprieve.

Fear is so very accessible, as is the tempting loneliness that if I stop moving, or writing or performing my 50th down-ward dog (yoga pose) of the week, I may just come to realise that my reality has u-turned and now I have more freedom than I know what to do with and after 16 years of being someone’s other, I am just an ‘other’. And permeated through my 28th day as a single woman again, lies the horrible truth of how am I going to do this? Well, my conclusion is, if I can discover at 16 that I was born with MRKH and face each and every uncomfortable, invasive, traumatic truth that came with that diagnosis, I know I can do this. If I can go through treatment at the stares of trainee doctors at the Queen Charlotte’s and Chelsea Hospital, London, I can do this. If I can continue that treatment each morning before school for nine months, I can do this. If I can live as a young and sociable woman knowing that one day I will reach 33 years old and never know what it may feel like to have my own children, I can do this. To tap into MRKH right now is my strength-how strange that in fact, we come as a duo and here I am looking over my shoulder for the courage that it asked me find all those years ago.

Here I am, my body yet again under the spot-light and the currency I place on myself is under evaluation-an exhausting process with no guarantee of how it will all work out. During my ritualistic Sunday morning yoga practice, I realised my chance of future happiness is having the faith that I deserve it. To position myself in relationships as a deserving woman and not a product of medical terminology and that four letter word, is now the key of getting through day 29, day 30 and then perhaps I will start to count in months and not in days (or hours on the bad ones).

Recently, I co-hosted the 2nd MRKH Support Group event in Sydney. To sit amongst so many beautiful women, mothers and professionals from The Royal Hospital for Women, I found myself conflicted with joy and a resounding fear that my courage for acceptance and self-evolution had morphed me from a timid, sad young girl to a strong and independent woman. Me, an independent woman, seeking out goals and a purpose- to find my place in this world without the shame to talk about who I am … but, did it lose me the last ten years? Perhaps this is life engineering itself for the next chapter of change.

Some may say – “does every conversation require a ‘confession?” No, it doesn’t. I don’t buy groceries or coffee prepared to talk about MRKH and offer my opinions of womb transplants but, are we not as women questioning daily how successful or aligned we are against the core fundamentals and innate female instincts that make us women in the first place? Have we not all spent years evaluating our own selection criteria to be a worthy part of this gender pool?

I will be the first to tell a young girl to never accept any less than perfect in the partner she chooses as, he has to be as special as the hand he is choosing to hold- and yet, I am struggling to accept this fate for myself; preparing to re-enter the pre-screening process and the Facebook probing that comes with a new relationship, and perhaps even the rejection when the facts of who I am are stumbled upon. It is a scary concept and one that never goes away- that is why MRKH is the creature it is. Unpredictable, unknown, un-ageing and utterly confusing. And here I am, placing my healing in its hands.

Perhaps this is all part of the greater plan, but as I log off from writing this post, I stare up to see my mum folding my clothes, making me a cup of coffee and reminding me of what we all overcame to make us the beautiful people we are today.

My faith is my plan.

Buckle up Ally- here we go again!

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The Power of Words

The Power of Words

MRKH Support and Awareness, the Facebook Support Group for the Beautiful You MRKH Foundation, Inc., received this series of messages yesterday on our Facebook support group. Reading the profound negative effect that word choice had on a community of women supposedly served by this mobile app reminded me that words have power. They have power to increase a person’s self-esteem and they have power to take it away. Calling a congenital medical condition a disease harms the very people that the greater medical community wants to help. If you are a physician, a nurse, a receptionist, a caretaker, a member of the insurance community or someone creating a mobile app to help people, please take the time to THINK about the meaning of your choice of words. Interestingly, on the online iTriage page, when I typed in MRKH, the tag line was condition. Had the people who designed the mobile app chosen to use the term condition, would the following conversation have taken place?

This upset me. I wanted to read what my health app would say about MRKH If it had anything about it and it came up as a disease. I lost it. It made me feel sick. makes me feel defective.

Response #1:

Hugs, while we are technically defective…as in we were born without all the right parts…it doesn’t define us as women. We just have to embrace our creative side and figure out what we’re going to do to compensate for missing a few parts. My BFF would tell you I certainly have a few screws loose, so missing parts is inevitable! You’re not alone in MRKH…I’m actually impressed your app knows about us, and think it’s pretty cool even if it does call it a “disease”.
April 9 at 7:32pm · Like · 8

Response #2

Definitely not a disease! I’m impressed that it came up in your health app though…my own doctor didn’t know what it was! Keep your head up:) you’re not defective or any other negative thought that may cross your mind. You’re unique:))) never forget that<3
April 9 at 7:45pm · Like · 12

Response #3

Infertility is considered a disease so maybe since mrkh is related to that. Idk that is difficult to see in writing though. 
April 9 at 9:26pm · Like · 1

Response #4  

A disease is any abnormal condition affecting normal functioning of an organism’s body, so technically yes, MRKH is a disease. That’s okay though, sure we have a few defects but that doesn’t make us any less, and it doesn’t have to define us. Hold your head high!
Yesterday at 12:33am · Like · 7

Response #5

Sending hugs
Yesterday at 1:23am · Like · 2

Response #6

I’m a mother to one of your MRKH sisters

First, let me say how wonderful it is that MRKH is recognized in an app! The word is getting out about it and that’s fantastic!!!

I’m glad your here to gain support from those experiencing the same feelings.

I too am concerned and upset with the way it is being described – disease or syndrome. Yes, when you dig enough it will describe almost any diagnosis as a disease. But when you add the education level of most of society, the word disease describes something that is attacking the body and/or organ.

I can tell you my daughter struggles with the word disease. Yes, we have went over the definition many times. To her the word disease means something that progresses and needs treatment. When she hears the word “disease” she envisions someone that has something like cancer or something she can catch. Clearly MRKH isn’t listed in those categories.

When she hears the word “syndrome” she understands it’s not something that has laid dormant in her system and now needs medical treatment. Most of society understands syndrome to be something that a person is born with, like Aspergers Syndrome. It isn’t something you can catch or transmit to another person.

I never like to compare any one ailment to another’s. Cancer, Aspergers Syndrome are completely different from each other as well as MRKH. They are all different and need to be defined as such.

I just feel that syndrome is an easier way of explaining the diagnosis than a disease. After all it’s in the title – Mayer Rokitansky Kuster Hauser SYNDROME 
Yesterday at 10:01am · Like · 10

Original Poster: that was the best explanation. Thank you so much for this. Thank you all of you. 
Yesterday at 10:08am · Like · 2

Response from response #6 Your welcome sweetie! I’m here to support you and your sisters and my daughter(s) any way I can! I hope I don’t offend or step on toes, because that’s never my intention 
Yesterday at 10:14am · Like · 3

Response #7 Thank you from me as well; Very well said; 
Yesterday at 10:18am · Like · 3

Response from Response #6 Your very welcome dear!! And thank you!! I am glad to know that my words and opinion help in some way!! I wish I could do more to help!! ))))Hugs((((
Yesterday at 10:22am · Like · 3

Response #8 Wtf

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MRKH comes to the surface in Australia.

“In my life, I will avoid all circumstances where public speaking is required of me. In fact, I have been known to tell my past employers that if they ever ask me to speak in public; in front of my peers, I will more than likely resign first”. This was not a threat, this was my reality. As it happens, this statement was also my opening line – and confession – as I commenced my speech at the first Australian MRKH Support Group for women at The Royal Hospital for Women in Sydney, Australia; in addition to “I am really quite scared”.

I am writing this blog whilst sitting on a flight heading to a work conference in the Gold Coast, Queensland. The hour flight is precious and uninterrupted, as I dissect what has actually happened to me over the last year. For many years I believed that the universe owed me big time! I was due a very long and over-due reimbursement from life.  It was my consumer’s right to be compensated for the opportunities, experiences, laughter, and love that I had been denied for the last sixteen years. Furthermore, I wouldn’t have to lift a finger to receive it. I could sit in my office or slouch on the sofa every weekend for an entire year and it was only a matter of time before the cheque would arrive in the post, singed ‘The Universe’.

I started writing eleven months ago. What started off as one short story, turned into my first blog; the blog that released me from my shame and the palpable, demanding guilt I shared with myself daily. The second and third blog entry swiftly followed and the fourth inched its way out of me after a period of great sadness and raw confrontation. What happened after that was magical – I allowed life to happen and had a heartfelt reconciliation with ‘The Universe’.  I professed, after many tears, “it’s not you, it’s me”, and “please The Universe, can we be friends once again?”

Earlier in 2013, I wrote an email to The Royal Hospital for Women exploring if there was an opportunity available for a support group and a face-to-face forum for women who have been diagnosed with MRKH. After a short wait, I received a reply; yes, there was!

Overwhelmed with an immediate and encouraging response, I ventured to meetings and exchanged many emails to coordinate and plan the Support Group with The Royal Hospital.

Jennifer Morrissey, a wonderful, warm and approachable woman soon became the person who would share this journey with me. She would become our advocate and spend her precious evenings folding letters and her days speaking with executives and the hospital board, seeking endorsement to plan the support group with me. Our meetings would last two hours, sometimes more and with each visit I was learning the facts and, at times, the harrowing realities of MRKH. 

Dr Rebecca Deans, a gynaecological physician with extensive experience of MRKH, attended the fortnightly meetings and acted as our MC at our very first group meeting, in addition to presenting on MRKH and Embryology and the relationship between the two. Dr Deans, shared with me, that for many years, she wanted to see a support group form and that perhaps this was our time to do so. 

Both Dr Rebecca Deans and Jennifer Morrissey both worked in The Queen Charlotte’s and Chelsea Hospital London where I was originally treated back in 1997 and suddenly, the world felt like a smaller place. I would meet with Dr Deans and Jennifer regularly to discuss how the day would unfold and what we hoped to achieve from this relationship. Dr Deans once said: “please call me Rebecca” and I was suddenly in awe of what was happening. My silent monologue often started with “what have you done Ally, you are changing. Embrace, smile and set your intentions now!”

During one of the planning meetings, I was informed that Emeritus Professor Michael Bennett had expressed his enthusiasm and support of the MRKH Support Group Meeting and would be presenting on the day. The moment I shook Professor Michael Bennett’s  hand, I honestly felt like I was in the presence of something quite remarkable.  He was like Gandalf from the Lord of The Rings. He was polite and stoic and absorbed every comment in the room as he, (the only man) sat listening and I am sure I saw a very small tear as the day concluded. I had the pleasure of sitting next to Professor Bennett throughout the day and as I was about to offer my speech, I leant over to him as though he was my teacher, my friend, and I asked “how do I do this?” He paused for a moment looking longingly at the ceiling searching for the correct words, to then find my eyes and wisely utter, “Speak as though they are your friends, as they are indeed your friends”. That was all I needed and so I continued to offer the story of my childhood, my diagnosis of MRKH, and the challenges and the tears I had experienced along the way. Of course, in hindsight, I wish I had said different things; perhaps my account was a bit dark and too honest?  However, I remembered to speak as though I was delivering the 6.00PM news bulletin (as news readers always seem confident), I made eye contact and I confronted the fear that paralyses me. I almost think I may be good at it.

Mothers cried and offered gratitude and daughters looked at presentation slides with focus and a wanting to understand what lies beneath our skin. I, for one, felt that this was my diagnosis day, as the white noise and denial clouded any formal explanation that was offered to me from my doctors back in 1997 and here I was, a patient looking on.

A woman, whom I can now call my friend, shared her story and journey of MRKH, discussing surrogacy and the challenges that she had encountered as a woman whose true purpose and desire was to be a mother. To go through life, battling instinct versus body, to welcome her daughter into the world, her miracle as she says. She was the mum she had always dreamed of, and as I panned the room for response, there were only tears.

After the biggest day of my adult life, I phoned home and just sobbed in pure joy.

Now the real work begins.

You will often read the words, ‘you are special, unique and beautiful’ and although I know you are all of these things, my instructions on how positive affirmations can change lives, will often sound hollow and futile. The messages often mirror from one girl to the next, as do the realities and fears that we share and by me saying that it will be ‘okay’, is far too easy a sentence to write. I do however believe in the struggles and have found myself only recently in a position where I questioned how honest I could or should be. So, in a bid to avoid sounding disingenuous or cured from the harsh difficulties of this diagnosis, I would like to ask if I ever meet you or speak with you, can we become friends and work through this together?  – I am simply humbled by you reading this far- my sister, thank you.

- Ally

 

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We are one in many, we are unique, and we are fighters.

They say ignorance is bliss but not when it comes to your health. Any detriment can creep up on you with no realization whatsoever. But what’s worse, Ignorance positioning itself in your corner or that of a figure as vital as your doctor or pediatrician? What if you went in for a regular check-up, received an examination, and unexpectedly heard the words “Wow I’ve never seen this before?” Those would be the most heart wrenching words I think I’ve ever heard in my entire life. Prior to my diagnoses, I had seen many surgeons and gynecologists who had never even heard of MRKH or had rarely ever seen such a severe case of endometriosis similar to mine (rookie move, I know). How could one on such a professional level attend medical school for 8+ years and not even brush up on a defect that affects 1 in every 4,500 women around the world coming from müllerian anomalies that effect 1 in every 23 women? It is so hard to be in this position but these are the obstacles that give us much strength and inspiration to persevere. Sometimes it is our personal obligation to educate the world.

I take incredible pride in my advocacy for the Beautiful You MRKH Foundation because our primary mission is to give a voice to the voiceless. With this voice we must enlighten those around us and continue to comfort those with similar difficulties to ours. It is almost baffling to think that someone with so much knowledge knows so little about rather common defects but that is why we were given these conflicts because we are pioneers. When I first started out in this difficult journey, I never thought I was able to take initiative and make a change myself but it was with the help of this incredible foundation and the support of my friends and family that I discovered this would give great purpose to my life. I though to myself that maybe this had been my mission and I was to speak out in favor of women who suffer from all kinds of müllerian anomalies. Do not ever think you were given these or any other life detriment because you are unlucky or undeserving of a smooth life. Instead, be thankful that these things happen to you, as physically and mentally painful as they can be, because you were believed to be strong enough to handle it. We are one in many, we are unique, and we are fighters. We are first, we are pioneers, and we are warriors.

Although you may feel alone, do not let it happen. Educate those around you and inspire them with the strength you have acquired by overcoming these obstacles. Most importantly, if you are in the first stages of this journey, educate your doctors, pediatricians, and ob/gyns because a cure begins with them but it all begins with us. As I am still young and still facing many troubles, I continue to see a plethora of doctors on a monthly basis. I know that I am still obligated to inform them no matter what their specific field of medicine consists of. The moral of this blog, and the point that I am trying to make, is that we are always given the conflicts we face for a reason. We have a voice and that is our most powerful resource. I know we cannot eliminate these anomalies entirely but we can most definitely change the results and turn all negative aspects positive by supporting each other and uniting in sisterhood!

- Carly

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My body. My choice.

Kristen picture

I think back ten years ago when I was sixteen to the moment I was first diagnosed with MRKH, and the whole thing seems like a blur. I can’t remember much besides feeling overwhelmed and completely confused, and I struggled with a strong feeling of isolation for a long time. It wasn’t until just after my twenty-sixth birthday that I found the Beautiful You MRKH Foundation and suddenly my eyes were opened to just how many women there were in the world struggling with the same things I was. It was such an incredible feeling to know I wasn’t alone! One thing really stood out to me, though, as I developed relationships with these women online… everyone I spoke with had already resolved their “not being able to have sex” issue. Whether by surgery or dilation, it seemed that they had all done something.

I am almost twenty-seven years old and have still done nothing to resolve that issue.  And I am okay with that!

The main reason I did not have anything done when I was first diagnosed was because the doctors who diagnosed me knew nothing about MRKH.  It was apparent that I was the first woman they had met that had the syndrome, and they didn’t have much information for my mother and me on what to do.  One doctor did mention that there may be a surgery that could be done, but he didn’t know anything about it and he had no information for us on who to talk to about it.  Basically, they explained to me what was different about my body, told me it was “very rare”, and sent me on my way.  My mother and I spoke about it, and I decided that it wasn’t something I really wanted to pursue at the time. Had I been adamant about getting it fixed, I know she would have searched everywhere for a doctor to help me. However, I was dealing with enough just with the diagnosis of MRKH and I did not think that adding the stress of a surgery on top of it was the right thing to do (at the time I was not aware dilators even existed). So I just pushed it to the back of my mind.

As I got a little older, I started thinking more about it. I knew that I would have to do something about it eventually, but I honestly just didn’t think I was ready. I saw a doctor when I was 20 who mentioned that there were options for me, and I told him I wasn’t interested. He seemed a little surprised by that… but when it came down to it, it was my decision. He tried talking with me about it, but I brushed him off.  I wasn’t going to change my body because a doctor said I should. It’s my body, and I wasn’t going to allow myself to feel pressured to change something I wasn’t ready for.

Once I hit twenty four, I thought I was ready to discuss my options. I spoke with a gynecologist, who referred me to a big hospital in the closest city. He wrote the information down on a card and I left with it in my pocket. I stared and stared at the card for weeks, willing myself to make the phone call. And then I realized, “if I have this much anxiety over this, maybe I am still not ready!” So I tucked the card away.

This year, at age twenty-six, I “came out” to all my friends and family about having MRKH, something I had kept mostly hidden for the ten years since my diagnosis. As I shared my story and spoke with other MRKH sisters I found through the Beautiful You MRKH Foundation, I really started to come to terms with my diagnosis. I started feeling more comfortable with it, and with myself.  And it hasn’t been until this point in my life that I have really started to accept the body that I was born with.  And now that I have begun to accept my body… now I feel like this is the right time for me to explore my options.

I understand that every woman is different in how they handle MRKH, and waiting like I did was a personal decision that I made for myself.  I do not regret my decision to wait.  I am glad that I waited until I was comfortable with my body before making any big changes to it. I am happy that I did not allow myself to feel pressured by others to do something I wasn’t ready for. And more than anything, I am thrilled that I have the support of so many MRKH sisters standing behind me.

Unlike when I was sixteen, twenty, and twenty-four, and feeling anxious and terrified at the thought of having anything done, I feel excited when I think of the prospect of getting this process started. I feel like I truly waited until the time was right for me, not for when anyone else told me it was right. I’m finally ready for this next chapter in my life, and I can’t wait to start it!

Kristen

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